Evaluation of the Personal Health Record Pilot for Medicare Fee-For Service Enrollees from South Carolina. Appendix 5. myphrsc Users Discussion Guide



Personal Health Record (PHR) Pilot for Medicare FFS Beneficiaries



My Personal Health Record South Carolina (My PHRSC)



Purpose: To evaluate the usability and utility of the PHR pilot, and to gain insight into issues pertaining to standards, design, and development principles used for the PHR.

Project Summary: The Office of the Assistant Secretary for Planning and Evaluation (ASPE) has contracted with the National Opinion Research Center (NORC) to conduct a study to identify PHR features that are most valued by end-users, as well as best practices in designing PHRs. 


  1. Key Intro Points:
  2. Introduce self
  3. We work at NORC (NOT CMS) and ASPE sponsors this study
  4. Goal of the meeting: Learn about your experiences using MyPHRSC; likes/dislikes; usefulness etc so Medicare can design a PHR best suited to meet your needs
  5. Remind them that MyPHRSC is just a pilot but there are many PHRs available that are similar
  6. Feel free to express positive or negative opinions
  7. All info you share is confidential
  8. Not required to share PHI or conditions/diagnoses (and we do not have access to this info)
  9. Note-taking without attribution
  10. Audio-recording, but not video taping
  11. Rules of discussion- talk one at a time; can disagree respectfully; share honest views, etc
  12. End at about 2:00pm, can pick up payment at that time
  13. Bathroom breaks OK
  14. Questions?

You have been invited here today because you signed up with South Carolina Medicare to use MyPHRSC, or someone else gave you access to his or her Personal Health Record.  MyPHRSC is a secure and confidential electronic Personal Health Record.  It lets you get information on all of your Medicare bills over the past 24 months. 

[FACILITATOR] Before we begin, I’d like to get a sense of how familiar everyone is with My Personal Health Record, South Carolina.

  1. How many of you have been using MyPHRSC on a regular basis since signing up?
  2. How many of you have used MyPHRSC in the last month?

[Based on the answers, facilitator decides if demo is necessary.]


We would like to show you some examples of what you can do with your PHR.  At this time, please get out your packets.  We have used made up information for a made up person so that you can see the kinds of things you might encounter using MyPHRSC.

[Give a brief review of the content of each page in screenshot packet.]


Group Introductions, 10 minutes

First, I would like us all to introduce ourselves.  Please tell us:

  • Your first name
  • What is most important to you about your health or healthcare?

Topic 1:  Overall experiences with computers - approx 10 minutes

1.       Overall, how comfortable are you using the internet or going online?

    • Can do it on my own and do routinely
    • Can do it on my own but do it only occasionally
    • Need help from my friends or family
    • I have never been “online”

2.       What kinds of things do you typically use the internet to do?

    • Banking
    • Shopping
    • Browsing for information: e.g., news, sports, weather
    • Find information about my health or health care

Now, I would like us to discuss potential benefits of using MyPHRSC.  We will talk about whether using MyPHRSC has changed the way you look for and use health information, such as keeping track of your doctor visits or medications. We will also discuss any problems you have experienced using MyPHRSC.   

Topic 2: Perceptions of PHR Utility -15 Minutes

a.    How often do you use MyPHRSC?


  • When did you or your caregiver sign up for it?

[For caregivers] When were you given permission to use MyPHRSC?

  • How long did it take you to learn how to use MyPHRSC easily?
  • Have there been changes over time (i.e., since you first signed up or were granted access) in how often you use it?  That is, once you became familiar with MyPHRSC, did you use it more or less often than you did at first?

b.    Why do you use MyPHRSC?


  • To manage my health information
  • To view my illnesses and conditions
  • To view my health care visits or procedures and immunizations
  • To learn more about health related information that is important to me 
  • To keep track of my prescriptions and over-the counter medications
  • To keep track of my health care appointments
  • To share information with my family members, caregiver(s) or health care providers

c.    How does MyPHRSC change the relationship between you and the people who help you with your health or healthcare, such as family members or caregivers?


  • Improved communication
  • Improved ability to manage the patient’s care
  • Any complications?

d.    How does MyPHRSC change the relationship between you or your caregiver and health care provider?


  • Improved communication
  • Less visits necessary
  • Any complications?

e.    How do you feel about sharing your Personal Health Information?


  • My information is secure
  • My information is not secure
  • I don’t know

f.     What changes, if any, would you make to MyPHRSC, and why?


  • Laboratory results
  • Advance directives
  • Give my provider access to my PHR
  • Access to a log that indicates who accessed my record

g.    Where do you use MyPHRSC?

h.    Is there something else you think needs to be included in your personal health record?

Next, we are going to talk about WHY you use the PHR, but we are also going to talk about HOW you use it. 

Topic 3: Perceptions of PHR Usability-15 minutes

a.    Do you know how to find the MyPHRSC website (the URL) on the internet? Why do you find it (easy/hard)?

  • Forget the website link
  • Have it bookmarked only on one computer
  • Do you know how to log in?
  • Do you need help from friends or family to use MyPHRSC?

b.    How easy or difficult is it for you to use MyPHRSC? 


  • Are the instructions clear?
  • What part of MyPHRSC do you find the easiest to use?  Why?
  • What else do you think MyPHRSC should be able to do for you?
  • How easy or hard is it to read and understand the information in MyPHRSC?
  • Right font size so it is easy to see
  • Plain English
  • Easy to understand
  • Colors easy to read
  • How may clicks does it take to get to the specific functions in MyPHRSC?

c.    Are you concerned about privacy and security issues related to using MyPHRSC?  If so, what risks are most troubling to you? 

  • General security breaches
  • Insurers and employers learning about health problem
  • Feel comfortable with the security of electronic communication with their provider
  • Any other concerns

d.    Did you see anything that surprised you in MyPHRSC?

  • Did you know who to call if you had problems/questions/or disagreed with data in the system?

Part of this study’s purpose is to learn more about whether using a Personal Health Record affects the health of Medicare beneficiaries.  We would like to hear about ways that you are using MyPHRSC to do things like prepare for doctor visits, manage medications, or get health information.

Topic 4: Perceived Impact of PHR Use on Health Status-15 minutes

a.    Do you ever use MyPHRSC to get ready for a visit to your doctor?

  • Does it help you to ask questions?  If so, how?
  • Does it help you to remember what medications the doctor has given you?
  • Does it help you to talk with the doctor about why you are seeing the doctor and what he is going to do?

b.    Can you tell us how you use MyPHRSC to keep track of your medications? 

  • Remembering how and when medications should be taken
  • Checking/ confirming how much medication to take
  • Checking for interactions with my medications
  • Sharing information in “My Medications” with my doctors or caregivers (allergies, interactions, or new over the counter medications)
  • Checking refill information
  • Keeping track of my vitamins, herbs, and over the counter medications

c.    Can you share with us some examples of times when your information in MyPHRSC has been valuable for you?

d.    Do you think the use of MyPHRSC has had a positive impact on your health, how you use your Medicare, your communication with doctors, or your own care at home?

[Do not offer prompts until beneficiaries have given their opinions.]

  • Keep better track of my medications
  • Keep my contact information up to date, e.g. address, phone number
  • Helps me talk with my doctors
  • Keep better track of my visits
  • Helps me keep track of how much I pay for my healthcare
  • Gives me facts about my health
  • Fewer repeat tests
  • Fewer unnecessary hospital/ER visits
  • Negative impact?

e.    Have any of you given permission to caregivers, friends, relatives, or health care providers to access your records on MyPHRSC? 

(MODERATOR should navigate to “My Permissions” page.] 

If so, to whom did you let look at your records and why?


f. (MODERATOR should pose this question to caregivers)  To what extent, if any, does MyPHRSC help you manage care across providers for the person you take care of?  What else could MyPHRSC do to help you arrange care for the person you care for?


Part of this study’s purpose is to learn more about whether using a Personal Health Record affects the health of Medicare beneficiaries.  We’d like to hear about ways that you are using MyPHRSC to do things such as prepare for doctor visits, manage medications, or get health information.

Topic 5: Consumer Satisfaction with PHRs-15 minutes

a.    Overall how satisfied are you with MyPHRSC?


b.    Do you feel that using MyPHRSC will improve your health or the health of the person you care for in any way?


c.    What changes would you make to the PHR to make it better or more useful to you?


d.    Would you be willing to pay to use a personal health record such as MyPHRSC?

  • How much would you be willing to pay per month?

e.    How current and accurate is the information in your PHR?

  • Are you able to find the information that you need?
  • Are you able to find information that is useful to you?


IV. Wrap Up — 10 min

Pearls of wisdom

Thank you, this has been a very interesting discussion, etc

We may be contacting you to follow up in a couple months for user observation studies (one on one) — would that be okay with everyone?

We are also contacting doctors in the Columbia area to ask their opinions of personal health records.  If you would like to provide us with the name of your local doctor, Ali is keeping a list and she would be happy to take your doctor’s name.

    • [We will not ask doctors any information about you, nor will we share any of the info you have shared today with the docs.  They will not know that we have spoken with you.] 

Synthesis of findings/ development of project report


View full report


"report.pdf" (pdf, 1.89Mb)

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